The Fountain House Community System of Care
The practice of integrating behavioral health care into primary care settings has existed since the late nineties. It is common for a psychiatrist or other mental health professionals to be integrated, as in the case of the Veterans Administration. Less common has been the practice of embedding a primary care physician in a clinic for persons with serious mental illness. Fountain House pioneered this concept and has been implementing it since 2000. This article will demonstrate how moving beyond the concept of integrated health care by introducing the social practitioner and social interventions as key components in assisting patients with SMI can facilitate recovery. At the Sidney R. Baer Jr. Center, the first integrated health home for people with serious mental illness in the US, Fountain House members access medical and psychiatric care. At Fountain House, they find social interventions. Through this comprehensive approach people with the most serious forms of mental illness can live and thrive.
Keywords: Integrated care; Serious mental illness; Premature mortality
In the late 1940’s, seven patients from Rockland State Hospital in Orangeburg, New York formed a self-help group that met in a hospital “club room” to prepare and support each other to reenter society. It was their decision, after being released, to continue meeting on the steps of the New York Public Library that planted the seed for the creation of a movement that has influenced the world. Never before had people living with serious mental illness banded together and set out to prove to them and to society that recovery was possible. Originally, they called their group “We Are Not Alone” which became Fountain House in 1948 named for its West 47th Street building that had a fountain in its garden.
Today, nearly 70 years later, Fountain House touches the lives of 1,300 members annually in New York City. Programs modeled after Fountain House exists in 34 US states and in 30 countries, reaching over 100,000 individuals.
The Fountain House model is a redesign from an individualized to a community focus. It values teamwork over hierarchy, choice over compliance, and real work rather than simulated educational and vocational experiences. Members are approached from a strength-based perspective that is motivational rather than diagnostic. Above all, Fountain House believes that people with serious mental illness can succeed in school and work, be good neighbors, and engage as productive members of society.
The concept of “integrated healthcare” is hailed as an optimal treatment approach for individuals experiencing coexisting mental and physical illnesses [1]. Integrated health clinics offer primary and behavioral care in one central location. Treatment is provided to patients experiencing a wide range of mental health conditions, from mild anxiety to schizophrenia [2].
To support people with serious mental illness in the community, it requires more than an integrated clinic with monthly medication checks and case management. Fountain House, known for its recovery services, has expanded its approach to create a new “Comprehensive Community System of Care” specifically focused on the most serious forms of mental illness - schizophrenia and bipolar disorder [3]. The new system goes “Beyond Integrated Healthcare” combining medical, psychiatric and-a vital, overlooked and underfunded third element: social interventions [4,5].
The social interventionsprovided within Fountain House’s non-clinical, strength-based clubhouse empower people with serious mental illness to form meaningful peer relationships, return to school and work, obtain housing and participate in wellness activities that improve and extend their lives. (Because people with more serious forms of mental illness tend to socially isolate, Fountain House creates place of inclusion that welcomes, encourages and engages members as active participants in their own recovery and brings meaning to their lives.)The clubhouse community becomes a therapeutic intervention [6].
Within walking distance of Fountain House’s clubhouse is the Sidney R. Baer, Jr. Health Center, one of the first integrated clinics in the US designed specifically for people with the most serious forms of mental illness[7].It has become clear that the current community mental health system lacks specialty practices focused solely on people with schizophrenia and bipolar illnesses[8]. One–third of Fountain House’s 1,300 members receive primary and psychiatric care at the Baer Center, which was created by Fountain House twenty years ago, before the concept of integrated healthcare gained popularity. Patients at the Baer Center have their psychiatric and medical records in one location. The Center’s staff and treatment team - comprised of the Fountain House member (patient), a Fountain House social practitioner, a Baer Center general practitioner and a psychiatrist –participate in a full continuum of primary and behavioral healthcare services. Together, they develop an individualized recovery plan. The social practitioner, based on an established relationship of confidence with the patient (Fountain House member) brings an in-depth knowledge of the person that is shared, with the patient’s permission, with doctors. The doctor because of his/her close working relationships with the social practitioner absorbs and utilizes this information in the treatment of their patients [9].
Social recovery interventions occur at Fountain House’s clubhouse, while medical and psychiatric interventions take place at the Baer Center. In this way, individuals are seen comprehensively, beyond just their illness, and supported to develop strengths while simultaneously treating their illness. Providers at the Baer Center maintain long-term relationships with patients. This has been proven to be a key factor in the success of people living and thriving in the community. Doctors discuss the circumstances of patients’ lives and their goals such as employment, education, housing, as well as physical and psychiatric health. One of the first questions a patient is asked when seeking care at the Baer Center is what his/her life goals are, beyond the management of the illness [9].
The Baer Center is able to include a focus on patients’ life goals and full medical, psychiatric and social recovery, because of its connection to and communication with Fountain House. An example of the complimentary support services Fountain House provides to Baer Center patients are the robust Wellness activities that take place every day at The Peter B. and Adam Lewis Wellness Center at the clubhouse. The Wellness Center supports a health-conscious culture in which members engage - at no financial cost - in fitness, nutrition and health education activities. For a population mostly unable to afford gym memberships, The Wellness Center offers state-of-the-art exercise equipment, running groups, and cooking classes. Fountain House members encourage and motivate each other to lose weight, eat healthier, reduce stress through yoga and meditation, stop smoking, stay sober and improve their overall wellness [4].
In addition to effectively treating primary symptoms of mental illness, Fountain House’s “Comprehensive Community System of Care” addresses and remedies other factors that adversely affect the health of people with schizophrenia and bipolar disorder, including: (1) declining physical health; (2) secondary reactions to diagnosis; (3) social disablements; (4) high incidences of relapse; (5) a growing treatment gap; (6) elimination of inpatient care and lack of a medical model for outpatient care; and (7) high cost of inpatient and emergency care. The downward spiral of untreated serious mental illness which includes substance abuse, imprisonment, long-term hospitalization, broken families, unemployment, homelessness, and suicide– can be set into motion by any one of these factors:
In addition to chronic mental disorders, people living with serious mental illness suffer from physical chronic illnesses, such as obesity, heart disease, and diabetes at alarmingly higher rates than the general population. Further compounding this growing problem, serious mental illness also compromises recovery rates from chronic disease. According to the World Health Organization, people with serious mental illness die on average 10-20 years earlier than the general population [10].
Secondary reactions caused by coming to terms with living with a highly stigmatized chronic illness can take the form of low self-worth, a shattered perception of self and ability, anxiety, feelings of greater sensitivity and vulnerability, and a propensity to isolate. These negative symptoms usually endure long after the primary symptoms of illness have abated. Researchers are finding that frequently, what Fountain House describes as negative symptoms; produce greater problems in engaging and treating people with mental illness than the actual primary symptoms of illness [11].
Stigma, discrimination, poverty, and unequal access to entitlements are just a few examples of the social disablements people with mental illness endure. The result of these can be seen in the following statistics: The unemployment rate of this population is 85% [12]. People with mental illness are one of the largest populations on federal disability. Students with mental illness have a 77% dropout rate in both high school and college. 40% of the homeless and 25% of the incarcerated are people living with mental illness [13,14].
Relapses further complicate the health and wellbeing of people living with mental illness. Relapse rates for people with bipolar disorder are as high as 40% in the first year and almost 75% over five years. 80% of people living with schizophrenia who stop taking medications after an acute episode will relapse within one year and 60% of all relapses are due to loss of medication adherence over time. When relapses occur frequently, people may become treatment refractory or resistant, taking longer to return to baseline and may need more medication. Symptoms may also become more persistent and impairments more severe, making it harder and harder to recover [15].
Over two-thirds of people living with mental illness in the US receive no treatment [16]. Common patient attitudes that deter people from seeking treatment include, fear of being labeled mentally ill with attendant discrimination in housing, employment and social relationships; fear of hospitalization; and belief that they cannot get help. However, the cost of treatment is the most prevalent deterrent to seeking care, according to the majority of findings.
Budget cuts are greatly reducing inpatient care. A person with serious mental illness is three times more likely to end up in jail than in a psychiatric facility. Studies are also showing that inpatient care without follow-up care is not effective: 30 to 60% of patients who are discharged from the hospital on treatment with antipsychotic medications alone do not show up for their first outpatient appointment; and 50% of patients are noncompliant with traditional antipsychotics one year after being discharged [17]. Even in light of the growing absence of inpatient care, there is no current long term practice guideline for outpatient care that focuses on the integration of people living with serious mental illness into their community [18].
The economic costs of the current mental healthcare model are considerable and carry their own burden. As noted by the American Psychological Association, the direct cost of treating mental illness is over $90 billion a year. Calculations that include indirect costs such as the cost of lost employment or decreased productivity, untreated illness, emergency care, and social welfare programs bring the total economic impact to over $270 billion a year [19].
The social interventions included in Fountain House’s new “Comprehensive Community System” of Care, yet missing in current Integrated Healthcare practices, have been determined to significantly decrease Medicaid utilization for people with the most serious forms of mental illness. A newly released research study by NYU Health Evaluation and Analytics Lab (HEAL) demonstrates, in fact, that Fountain House members have a 21% decrease in total cost of care [20].
Additional research has shown that the re-hospitalization rate of Baer Center patients is 10%, while re-hospitalization rates for people with schizophrenia in the general population are as high as 50% [21].When Baer Center patients do go to the hospital; they have a 50% reduction in length of stay [21]. Baer Center patients demonstrate a 20% reduction in the use of high cost services, such as emergency room treatment and inpatient care [19].
Additional benefits of “Comprehensive Community System of Care “include:
• Early detection and prevention of chronic medical diseases and other physical conditions, with specific attention being paid to metabolic syndrome [22].
• Centrally coordinated medical and psychiatric services [23].
• Collaborative development of individual, customized plans for treatment and recovery by members, their staff workers, primary care and behavioral healthcare professionals [24].
• Greater understanding of self-care, improvement in self-esteem and enhancements of quality of life due to members’ active participation in their recovery process both at the Center and in Fountain House’s community-based wellness programs [4].
• Improved social interactions and relationships;
• Increased member satisfaction with healthcare treatment and services;
• Rapid and effective engagement with members during both sudden illnesses and ongoing coverage through a fully integrated electronic medical record database that contains information from psychiatric and medical caregivers [21].
• Creation of a new practice model for both community psychiatrists and general practitioners that can be easily replicated [25].
Specialized programs using anew “Comprehensive Community System of Care” that goes “Beyond Integrated Healthcare” represent a cost-effective, successful approach to the complex physical and psychiatric needs of people with the most serious forms of mental illness. Qualitative and quantitative outcomes have broader implications for social programs that include environmental interventions to prevention and well-being services. The current community system of care is failing, as evidenced by increased rates of homelessness, incarceration, and emergency room use. New community organizations specialized in treating people with serious mental illness must emerge. The use of multi-service agencies serving a variety of illnesses has proven ineffective in helping those with the most serious illnesses. As the national conversation around Medicaid advances, Fountain House’s “Comprehensive Community System of Care” produces real solutions and cost-savings.
There are no conflicts of interest involving the authors’ relation to the writing of the article and its subject matter.